The Eternal Asterisk of Chronic Illness

“Join us for dinner, I feel like cooking.”*
“Yes, get me a ticket for the baseball game.”*
“See you at yoga tomorrow.”*
*unless I’m too pained, dizzy or nauseated to do so

For about 10 years, this was the pattern whenever I’d make plans: My excitement would build as the dinner/concert/play/party approached. I’d spend the day resting, hoping to build energy reserves, and give myself a couple hours to shower and dress. The migraine pain/exhaustion/dizziness/nausea would persist despite my best efforts to supplicate it. I’d push myself and become distressed, and worry and panic would fuel the migraine. Angry, I’d crawl into bed (or sometimes collapse on the floor) and ask Hart to call our friends to cancel.

After years of disappointments — and lost friendships — from last-minute cancellations, I stopped making plans. The pattern was just too painful to repeat. I withdrew further into the isolation of chronic illness, dragging my husband in with me.

Moving back to Phoenix, where my friendships are long-established, I began making plans again, knowing my friends would understand if I had to cancel and that, if we had couple plans, they’d welcome Hart even if I couldn’t come. So now I make plans with an asterisk. I’ll come to your party, meet you for tea, go to a mini high school reunion, as long as I’m up for it. I still don’t like rescheduling and am reluctant to buy tickets for events that I’m not sure I can make, but I am no longer ashamed or embarrassed when I have to stay home.

Shame or guilt were only part of the problem. If I couldn’t go out, I felt like I was letting migraine win. Like my default mode was healthy and deviance was an anomaly. Truth is, my default mode is migraine (“chronic” might have been the first clue). I’d been too stubborn to see and too ashamed to admit that I was too sick to live a “normal” life. Coping with chronic illness isn’t a matter of winning or losing, but of being honest with myself. And that may be the biggest challenge of all.

15 Responses to The Eternal Asterisk of Chronic Illness

I Really feel for you. There is nothing hardly worse than a severe migraine headache. Stay diligent keep searching and keep trying new things and hopefully good things will happen. I am sure you have allready tried chiropractic, if not it is a good case for the chiro. Not always a cure but hopefully a good improvement.

I am so happy that you are living in a place with established friendships. I, however, have become sick with my chronic illness in a place without that support. Those so-called friendships all withered quickly away and I feel so lonely. Now, for the past three years, I have been left to deal with this on my own (with just my husband). We were once such social people… I look in the mirror and I don’t even recognize myself anymore.

Thanks for all for your kind words. I miss Seattle terribly, but I’m grateful to be back in Phoenix.

I’ve tried to build a life in two new cities while having chronic migraine and it was so difficult. Though it isn’t the same as being with friends, I found online forums very helpful in that time. Migrainepage.com was my favorite. I also recommend the Migraine.com and ChronicBabe.com forums.

I’m so happy I stumbled upon your blog via a google search about medicinal side effects today. Reading this made me feel much less alone in the world; literally no one I know suffers how I do, so they don’t understand. They all think I’m being “dramatic” or “too sensitive” – whatever the term, I’m constantly in that “I’m letting people down” mindset. Today, I was supposed to drive 3 hours to teach sick kids for my nonprofit organization, then spend some time with my boyfriend, whom I haven’t seen in over a week, but I cannot, because the side effects from my migraine medication are making me too sick to get out of the fetal position. I always feel like I’m letting them down. I’m glad to know that somewhere out there is a life of understanding. I just hope I find it. :-/

I’m sorry you’re suffering so much, Stephanie. I asked about your medications in response to your other comment. There might be alternative medications that still help with the migraines without the side effects.

I’ve been a fan of your blog for awhile. I do have to admit that when I’m feeling well I try not to think about migraines because I’m pretty empathetic and can sometimes take on other’s pain. Crazy?! Probably.

Anyway, I was walking in the dark very slowly with my husband as I’m coming out of a 4 day brain blaster and he said, “maybe we just shouldn’t plan anything.” Before anyone thinks he is unsympathetic or just mean, he was saying it more in an observational manner and joking about all of the events that some how get cancelled on my behalf.

Catch up on your blog (wishing I had those new glasses since my iPad is unbelievably bright t it’s darkest setting) and read this post. Have you even thought to yourself, ” maybe everything should be a surprise?”

I used to plan events all of the time and invite anyone and everyone to my house, we had a cookout and it was like I have never had a party before. I invited people the day of and realized most people need more time than a few hours… Is this where my migraines have taken me? Socially awkward and bad party planner?

I would love to hear about anyone else’s experiences because I was kind of embarrassed when my friend said, “it’s kind of short notice…”

I hear you! I’m the same exact way. Sometimes the fear of not knowing if you’ll be up for whatever you have planned is worse than not making plans at all. Glad you have people in your life who understand.

Kristen: I used to have parties all the time, too. Sometimes the last-minute thing works and other times it doesn’t. Then again, I’ve tried planning in advance and had no one show up! You’re not socially awkward and a bad party planner — you just have to deal with the world in a different way than most. Take care of yourself.

Sarah: Thanks for the support. I hope you have understanding folks in your life, too.